Information, services, and support needs of people experiencing memory loss: qualitative findings

Description

Alzheimer’s disease and related dementia (ADRD) are increasing in incidence globally; by 2031 there will be 937,000 people living with dementia in Canada (Alzheimer’s Society of Canada, 2017a). The burden associated with living with dementia is multi-faceted and involves the lives of multiple people. Since 1978, the Alzheimer Society of New Brunswick (ASNB) has been dedicated to helping people and their families live with ADRD. The values of “C” – caring, “A” – accountability, “R” – respect, and “E” – excellence have helped to guide the ASNB in helping to alleviate the personal and social consequences of ADRD through support, education, and advocacy. As researchers with the Faculty of Nursing at the University of New Brunswick (UNB) we were asked to obtain a ‘snapshot’ of the current services available for people living with ADRD and their families in NB and of family informal caregiver satisfaction with these services. The three objectives of this project were to 1) examine family informal caregiver’s experiences in obtaining services for their family member within the health care and social support systems through in-depth semi-structured interviews, 2) examine health care provider’s (HCPs) experiences in obtaining appropriate services for clients experiencing ADRD and their informal caregivers through in-depth semi-structured interviews, and 3) conduct a secondary analysis of electronically-available data collected by the ASNB to describe usage patterns of the First Link Program since its introduction in June 2015. In this report the first two objectives of this project are addressed. A separate report will address the third objective. What follows is the report of our findings from the many consultations with the ASNB and in-depth interviews completed with informal caregivers of people with ADRD and HCPs from around the province. We interviewed 19 informal caregivers of people living with ADRD and 19 HCPs who work directly with people experiencing ADRD. Words of the participants, both informal caregivers and HCPs have been interwoven throughout the document (in italics) to bring to life the very real experience of dealing with ADRD in New Brunswick. The proposed research was reviewed by, and is on file with, the UNB Research Ethics Board prior to commencing data collection. We have done our best to protect the identity of the participants, respecting their right to privacy.